Forum Topic Commentshttp://www.melanoma.org/forum-topic-comments/27057
enRe: Update and Question re: Ipi and intransit metshttp://www.melanoma.org/node/27057%23comment-75088
<p>Thanks Jerry for your reply. Are you thinking 16 weeks from the last infusion? Or 16 weeks from first infusion? </p>
<p>I am most definately looking at a Plan B. Just in the last week I've had 2 more pop up. It's true I'm not completely sure that they're intransits (and won't be sure without a biopsy on them), but they're right next to my SNB scar, and are all in the same general area on the inside of my upper arm (primary on hand). </p>
<p>Thanks for your help!</p>
<p>Julie</p>
<p> </p>
Monday, April 28, 2014 - 13:37Julie in SoCalhttp://www.melanoma.org/%3Ca%20href%3D%22/comment/75088%23comment-75088%22%3Eview%3C/a%3ERe: Update and Question re: Ipi and intransit metshttp://www.melanoma.org/node/27057%23comment-75067
<p>Julie, there have been a few reports of Ipi showing results in about a month. There have also been reports of it taking a year to start shjowing results. Anything in between is possible. I would, if not showing positive results after 16 weeks, be looking seriously at a Plan B. PD-1 is a good Plan B. I would also want the Oncologist to confirm if the new locations are indeed melanoma Mets.</p>
Sunday, April 27, 2014 - 19:51JerryfromFauqhttp://www.melanoma.org/%3Ca%20href%3D%22/comment/75067%23comment-75067%22%3Eview%3C/a%3ERe: Update and Question re: Ipi and intransit metshttp://www.melanoma.org/node/27057%23comment-74985
<p>Hi anon,</p>
<p> </p>
<p>I really don't know if there is a list as such, or what the wait time is. As I think back over the apt I had with Rock Star doc, I'll I really remember him saying was that if I failed Ipi, pd1 could be a back up and that I would qualify.</p>
<p>my suggestion is that you talk with a clinic that has been a part of the pd1 trial and see about getting your husband in.</p>
<p>sorry I can't be more help,</p>
<p>JulieJulie</p>
Wednesday, April 23, 2014 - 21:30Julie in SoCalhttp://www.melanoma.org/%3Ca%20href%3D%22/comment/74985%23comment-74985%22%3Eview%3C/a%3ERe: Update and Question re: Ipi and intransit metshttp://www.melanoma.org/node/27057%23comment-74978
<p>Julie,</p>
<p>One more question if you have time to answer it:</p>
<p>You mentioned that "I'm on the PD1 expanded access list". Are you on the waiting list because you are not sure that IPI could be working for you &amp; you need more time to access IPI or are there just so many people wanting to get into the EAP.</p>
<p>I am trying to get a sense as to if there are going to be LONG waiting lists for EAP like there were in some PD1 clinical trials.My husband cannot wait.</p>
<p>Thanks again for the help</p>
Wednesday, April 23, 2014 - 19:29Anonymoushttp://www.melanoma.org/%3Ca%20href%3D%22/comment/74978%23comment-74978%22%3Eview%3C/a%3ERe: Update and Question re: Ipi and intransit metshttp://www.melanoma.org/node/27057%23comment-74976
<p>Hi Anon,</p>
<p>I can't say I really know about how the EAP works- it's best to talk with the drs- I'll pass along what I heard.</p>
<p>I know you have to have failed ipi. This is for sure. But there seems to be wiggle room in the "Failing BRAF" language as Rock Star Doc has said that I would not need to have failed a BRAF drug to get on the PD1 EAP. I think this is because it wouldn't make any sense for me to take a BRAF drug, as my tumor burden is very small (I only have intransit mets).</p>
<p>This is how I understand it, anyway. I may be wrong. Best to talk with your dr.</p>
<p>Julie</p>
Wednesday, April 23, 2014 - 17:45Julie in SoCalhttp://www.melanoma.org/%3Ca%20href%3D%22/comment/74976%23comment-74976%22%3Eview%3C/a%3ERe: Update and Question re: Ipi and intransit metshttp://www.melanoma.org/node/27057%23comment-74975
<p>Thank you Mat this is very helpful. I'm sure my doc said something like this, but I didn't bring a scribe (friend) to my last appointment and couldn't remember the details.</p>
<p>I'm just now going into the 16th week, so I should keep watching. So good to know and maybe I will be a responder.</p>
<p>Julie</p>
<p> </p>
Wednesday, April 23, 2014 - 17:39Julie in SoCalhttp://www.melanoma.org/%3Ca%20href%3D%22/comment/74975%23comment-74975%22%3Eview%3C/a%3ERe: Update and Question re: Ipi and intransit metshttp://www.melanoma.org/node/27057%23comment-74972
<p>Hi Julie,</p>
<p> </p>
<p>I am new this forum. My husband is stage and failed ipi. We have to talk to his doc now to see what is the next treatment.</p>
<p>We read alot about Merck pd1 EAP. We understand that you have to have failed IPI first beforeyou get into EAP.</p>
<p>Also I have read that if you are BRAF positive that you need to do a BRAF treatment BEFORE you can get into the EAP. Did your Rock Star doc mention anything to you about that? Are you BRAF Positive? Does anyone else know about that BRAF rule who is reading this post.</p>
<p>You mentioned that "I'm on the PD1 expanded access list". Are you on the waiting list because you are not sure that IPI could be working for you &amp; you need more time to access IPI or are there just so many people wanting to get into the EAP.</p>
<p>Thanks for helping me understand the requirement/criteria for EAP.</p>
Wednesday, April 23, 2014 - 17:05Anonymoushttp://www.melanoma.org/%3Ca%20href%3D%22/comment/74972%23comment-74972%22%3Eview%3C/a%3ERe: Update and Question re: Ipi and intransit metshttp://www.melanoma.org/node/27057%23comment-74971
<p>Based on what I've read, many patients see results (or not) via scans between weeks 16-24 from the start of ipi treatment. Of course, there are patients that see results earlier and later.</p>
Wednesday, April 23, 2014 - 16:05Mathttp://www.melanoma.org/%3Ca%20href%3D%22/comment/74971%23comment-74971%22%3Eview%3C/a%3ERe: Update and Question re: Ipi and intransit metshttp://www.melanoma.org/node/27057%23comment-74967
<p>Hi Mary Beth &amp; Anon.</p>
<p>Thanks for sharing your experience.</p>
<p>Yes, Rock Star Doc has a Plan B: I'm on the PD1 expanded access list. But I'd rather not have to do another treatment if I don't have to. Also my intransits are really small: one is pea sized, the rest are rice size. Yes, I know they can grow fast, but they haven't. Maybe Ipi kept them small? If Ipi is working, I want to let it work, but if it isn't then I'm all for moving on and going forward.</p>
<p>Really I just want my old life back (doing anthropological research and training in Asia), and I'm trying to adjust myself accordingly. It's just the waiting and watching that's getting to me.</p>
<p>Julie</p>
Wednesday, April 23, 2014 - 14:52Julie in SoCalhttp://www.melanoma.org/%3Ca%20href%3D%22/comment/74967%23comment-74967%22%3Eview%3C/a%3ERe: Update and Question re: Ipi and intransit metshttp://www.melanoma.org/node/27057%23comment-74965
<p>Hi Julie,</p>
<p>I have NO experience with IPI but I have been taking Braf for over 1 yr. My tumors melted away within the 1st month.</p>
<p>Have you been tested for Braf. If so, has your doctor talked to you about taking BRAf, if you do not respond to IPI.</p>
<p>I read your other posts and it sounds like you have a very experienced doctor, as you say "Rock Star" doc, what is his opinon??? Does he have a Plan B for you?</p>
<p>Good luck, hope you do get a response for IPI.Hand in there!</p>
<p>MaryBeth</p>
Wednesday, April 23, 2014 - 13:00Anonymoushttp://www.melanoma.org/%3Ca%20href%3D%22/comment/74965%23comment-74965%22%3Eview%3C/a%3E